On Losing Stephen   – A Sister Reflects on her Ministry as Hospital Chaplain

I trudged through the crisp January snow on route to the Haematology Ward in the Belfast Hospital for Sick Children, with the biting cold nipping my nose. When I arrived the warm blast of hospital air was most welcome. Heading towards Stephen’s room which I had done for the last thirteen months, I was stopped in my tracks by a nurse, saying,” Stephen’s gone home, Sister.” “Oh, that’s great news!” I replied. Her body language indicated that all was not well as she continued, “Well, they have stopped his treatment, the brain tumours are growing too quickly and the chemo is not working.”  My mind flooded with thoughts of Stephen’s Mum and Dad. Images of Stephen flashed in front of me. Two years old, knowing little other than being violently sick from the chemo treatment through all those days, weeks and months, a small body limp and lethargic, spiking temperatures, the constant attachment of tubes and drips. “How do you put up with it?” I once asked his parents. “We don’t, Sister. He does. For us it is now a way of life.”

Too often I found myself standing at the “pier of life” throwing a life -line to Stephen’s parents, drowning in their sea of pain and hurt. The early diagnosis of his illness was like a storm that came unexpectedly. A human storm that bashed and battered their joy and flooded them with depression, anxiety and dread. Sitting with Anne and John was no mean task. Together we discovered that it was not the quantity of suffering but the seeming meaninglessness of the suffering that posed the deepest threat. The meaninglessness became the enemy that could not be understood. It stood as a challenge to all that we believed and understood of God. Looking at Stephen’s illness and disease, I might have seen only physical diminishment. Yet when I dared to look beneath, I saw it as something that taught me vulnerable lessons about waiting in darkness with hope and trust. I was quickly ushered into places of mystery. Leaning into that mystery of the unknown, waiting there, I glimpsed that in that fear of the unknown hid the promise of life. I waited patiently for understanding and clarity, as I lived with insecurity and uncertainty in the face of illness and death.

My journey with Stephen, Anne and John began thirteen months ago. It was often hard and anguishing to sit with Anne and John when they were angry at an illness slowly robbing their two year old son of life –equally hard when they were seething with resentment and struggling to forgive God. It was painful to watch them fight the inevitability of terminal illness and grapple to keep things just as they were instead of letting go, to struggle to keep control rather than to let life evolve.  Stretched by my own sense of weakness and powerlessness, I was tested in my own belief of a God of love. I had no right answers. Here was a young life being cut short, a young couple in their anguish looking to me for some explanation as to what kind of God would do this or why this should be happening to their child? Victor Frankle said that “Anyone who has a why to live for can bear with almost any how.” Yet, I found it difficult as chaplain to help Stephen’s parents discover any meaning and purpose in their child’s suffering and indeed their own. I felt very uncomfortable not being able to answer these questions myself or ease their hurt and pain. I struggled before God, recognising in myself something of the same anger and brokenness as felt by Stephen’s parents. Despite the pervasive sorrow they experienced in letting him go day by day, their love was alive and pulsating.

Searching for the love and mercy of God in the face of Stephen’s illness and inevitable death, it was his parents who gifted me with the meaning of God’s compassion. They taught me how to listen to life hidden in the dying, how to face the painful reality that nothing lasts for ever, and how to recognise that everything flows into something new. They became the bridge reaching between me and the God I called “Mercy”. They taught me what it was to move from resistance and bitterness, to trust in the mystery, as they came to discover that it was this mystery which was at the heart of the process. It was so easy and comfortable for me to voice platitudes about death being an integral part of the Mystery of Life, about death being woven into the fabric of the universe. As they clutched onto the hope of treatment after treatment with such a tenacious grasp, I was challenged by their courage to stand strong and maintain a positive outlook. Even though they felt afraid, broken- hearted and abandoned, hope seemed to keep them going, a hope that is not optimism but an elusive value. They were witnesses to me of a hope that comes into play when things seem hopeless, when we can’t see events clearly but hold onto something that keeps us going. When all appeared to have been snatched cruelly from them, hope seemed to rise up within them. Their courage and endurance reawakened my sense of hope. In Stephen’s parents I found a hope that is the kind caked in mud and held with gritted teeth. They convinced me that God finds us in the ruins of our lives.

Within their storms I saw in Anne and John the hidden mystery of human care and concern, the power of faithfulness, generous help and compassionate understanding. They recognised that what truly counts in one’s life is finding new courage in learning to let others be a support to them. It was really humbling to discover that the roles were reversed. Instead of me ministering to Stephen, Anne and John, they ministered to me. They were the true bearers of God’s Word to me when I was swept away, pulled out of my customary comfort and into places where I did not plan to go.

Stephen died on January 21st, 2011. May he rest in peace.